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Marge Wherley's avatar

I have mast cell activation syndrome. I have spent the majority of my 73 years with my multi-system symptoms and bizarre (but benign) growths. I understand that it was only recognized in 2016. MCAS is a complex disorder with difficult testing, and that virtually no physicians are trained that this syndrome even exists. I was lucky enough to be referred to the pre-eminent expert on MCAS. But despite the fact that I was lucky, I am on a FB group with hundreds of people who have- or believe they have MCAS. They are terrified. And from my own experience and theirs, there is little sympathy in our doctors’ offices for a complex disorder for which there is little reliable testing and no standard treatment. We have been labeled “depressed” or “hypochondriacal” and even “fired” from their practice. We have made frequent ER visits with anaphylaxis’s. I volunteer for teams of medical students, to teach them about MCAS and the experiences people with chronic, complex diseases have - and they confirm that none of their professors have spent more than 10 minutes on such topics. Doctors are obviously uncomfortable with their lack of knowledge but they are not focusing on the fears and limitations of our lives. Perhaps if AI had been able to determine an initial diagnosis, patients AND physicians could relax enough to listen and offer that extra care you describe. I hope AI can help.

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Judy Lipson's avatar

I love your newsletters. Read everyone and share so many. I happen to be looking for a new doctor, but you’re not even close to my community. My point is… How is it that you have the time to sit with people to really clue in on what’s going on, and to connect, as well as all the diagnosing and treating? What’s the key that I’m asking for when I interview new physicians? TIA

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